End of Year Health and Mental Health Self Advocacy for Allison, finally.

 

psychosistwoterrifyingbuttreatable

Right now things are cheap. I’ve met all my deductibles and struggled through the donut hole. My medical expenses have become three times as high since I got tardive dyskinesia. So it’s time to get procedures like routine stuff and even colonoscopy type crap out of the way and when it’s 2017, avoid going to the doctor as much as possible. My deductible for meds alone is 300.

The meds for psoriasis 200 mo and that’s in catastrophic…the meds for tardive…copay is 300..These are ‘specialty’ medications. I’m not sure what makes them ‘special’ ….as for the increased med xpenses post Tardive, I have thoughts on this matter but have never gone after a lawsuit. I actually have a better idea. I’m writing a book on it.

 

The cursor is blinking. Does that mean it’s time?

Why do I blog? I mean, really????

alblackdressmall

 

I used to be in radio, which is a commercial business that carefully calculates who they are trying to reach, how old they are, race, level of education, income, etc. My format, alternative, was aimed at 18-34 year olds, 60-40 men, mostly and women. At the time, I was in my thirties (I did this from 29-39). I knew as an employee, I’d age out sooner than later. When the ad department sells that Saturday Afternoon live remote from the car dealership, they don’t want to send out a 55 year old woman, I mean, not really.

 

The reason I bring this up in the overall discussion of why I do what I do… is I rarely blog and am even guiltier of not reading and responding to others. I hardly ever go on facebook. Twitter? Can’t be bothered, yet this is the best place to ‘reach out and touch’ someone.

 

Basically, I am looking to collaborate on an intellectual level with writers, bipolar so much the better. I’m in that phase of writing articles for magazines and the local newspapers (Miami Herald, South Florida Sun Sentinel, Bipolar Hope, etc.,) and try to figure out which books to write and which topics to include.

 

I can’t figure out if tardive dyskinesia belongs in a separate book all its’ own. What do you think?

I can’t get anyone to tell me how many of us there are.

The info I’ve dug up is of practical information to those of us who take the drugs that cause them…..those atypical antipsychotics advertised as ‘helpful for depression’ that list warnings for antidepressants so the consumer doesn’t realize they are being prescribed a cousin of Thorazine, a drug that helped a ton of people in the 52’s and emptied mental institutions. Those people could now live their lives on the outside.

The info on movement disorders caused by Reglan and antipsychotics that I can’t seem to dig up is even more interesting.

Many neuros in the field say they’ll answer questions and then blow me off.

I know why this is and want to write about it. It’s not damnning, but it’s practical knowledge we are deprived of.

I lost my grant for tardive medicine this year. It’s changed my perspective. To put it lightly.

I am just looking for feedback. But it seems like a crowded field out here. Especially when you get to the point that you are writing for all these publications demanding copy guaranteed to print….it’s hard to come back and blog, sorta.

Self Advocacy

tiarawithoutsilver 001Even warrior princesses crash and burn sometimes….

 

Oh, the time it takes! I lost my grant to get through the part D ‘coverage gap’ or also called ‘Donut Hole.’ I have to be on “Straight Medicare” because I see so many specialists and even my primary won’t accept one of the “Medicare Disadvantage Plans.” He says they are necessary (“Straight Medicare) for ‘Survivability’ but then, Dr. Morton can be a tad dark.

But right now, so am I? How am I going to afford my drugs in the spring of next year?

When they talk about Mental Health Reform, they should start with the Donut hole, because if you get someone all fixed up with mood stabilizers or antipsychotics, and then the donut hole hits…they go all the way back to square one. It’s Sisyphean even. Rolling that stone up the hill over and over only to have it roll down again.

There has got to be some rich person out there who would love my tardive dyskinesia book to be published, give me a small grant so I can pursue that. I’m already hunting down sources so I can get metrics. But who is listening to me, anyhow.

Nord, National Organization for Rare Diseases, has blown off four phone calls and four emails.

Why?

The story on the concentration of power in the hands of a few and unlimited pricing power is scary

The following is a fax I just wrote to my pharmacist, an indie who is really up on this stuff. He is the one who had my back; covering the inflated cost of my 62-year-old Benzo for Tardive Dyskinesia two months in a row thinking Medicare Part D would reimburse him. He took the loss two months in a row on my behalf. He’s got my back. do I have his????? This is what I ask myself and I urge you all…..skip the chains. Indies are where it’s at for cost and service. They get to know you and catch drug drug interactions and side effects your doctor might be too busy to catch. It’s their business and they are damned good at it.

 

2-22-16

Dear Ade,

Good Morning, The stories about monopolies and prescription drugs just keep getting worse.

I read this transcript of a testimony given for senate oversight committee of government reform re: prescription drugs. The guy’s name was Mark Merritt, claiming to head up the league of pharmacy benefit managers. He claims they leverage lower prices on prescriptions, bla, bla bla.

Then I read a New York Times article by a Yale University Endocrinologist who says that one of the three biggest PBM’s Actually IS CVS! Even tho insulin has been around forever, only three big companies control the market and have managed to keep tweaking their meds to extend patent protection all these decades. Her patient can’t afford the price of insulin once she hits the donut hole and can’t afford her medicine for the rest of the year because it’s too expensive and she doesn’t qualify for RX assistance or Medicaid. This is the situation I find myself in but I have more cash on hand than most.

Isn’t that a Conflict of Interest? She claims once her client hits the donut hole she can’t pay for her medicines and what’s worse, only three people …Lantus, Sanovi and Norvo Nordisc, make injectable insulin, a biologic, which has been extended patent protection for 12 years, not 7, and controls the insulin market until a biosimilar shows up. Every time I think I have the story figured out….it gets worse!!! Now I’m thinking of submitting a story to the Sun Sentinel. What have I got to lose? At least they are not compromised.

 

OK..More importantly,

I’m coming going out your way tomorrow to see the dentist so I have an RX list of stuff that’s close or due. I’m out of donut hole so I’m an aggressive consumer again, saving my extras for the months I can’t afford anything.

Here is the list: Valium, Metformin, Linzess, Lipitor. I’ll drop off the scripts. I see psychiatrist this week so anything we need I will find out from you.

Love,

Allison Strong